30 Days of Yoga for FSMA! on Monday, March 17, 2014

(photos from past FSMA conferences)

It’s been too long since we’ve written! Sometimes we’re just too busy living life to write about it…

My first experience with the organization Families of SMA was days after Oscar’s diagnosis when I timidly visited their website for the first time. I saw a photograph of two children from behind—a young girl in a power wheelchair with supports holding her head in place, and a little boy walking beside her, holding her hand. This photograph, at that time, made me sick to my stomach. Would that be my little boy? How soon would he not be able to hold his own head up anymore? Also, on that first brief and terrifying visit to www.fsma.org, I read the words, “Life with SMA doesn’t have to be any different,” and I got angry. Really angry. How dare they tell me that? My whole life has just been turned upside down and is quite different from anything I ever expected.

A few weeks later a large package was delivered to our door with an FSMA return address. By large I mean easily two-and-a-half feet high, wide, and deep. I was scared to open it at first. What scary things associated with this new diagnosis could be lurking in this box? But the contents were not scary at all: a bumbo chair, bubbles, nerf ball, squirt gun, jack-in-the-box, a dvd, and a handful of other toys.  I was dumbfounded that strangers in an office in Chicago had sent this box of gifts to our family. The generosity itself present in this offering meant more to me than the items, and indeed turned out to be symbolic of the nature of the organization.

Six months later, the three of us, along with my mom, boarded a plane to California to attend the annual FSMA national conference. We were like deer in the headlights arriving at the hotel where over a thousand others were also gathered for the same purpose. But there we met others who were living the same new normal as we were. We found a community that has become like an extended family.  Each year now, we look forward to the FSMA conference with great anticipation—a chance to connect with other families affected by SMA, and to learn from the top SMA researchers from all over the world.

Today, I can look at that same photograph that is still on the website and delight in the beauty, the independence, the love that is depicted (and incidentally that power chair the girl is driving is the same model that Oscar uses today). Also, I can find real truth in the words that first made me so angry. When we are able to openly embrace all that comes our way, indeed life doesn’t exactly have to be so different with SMA.

But what does all of this have to do with yoga, you might ask? My friend and colleague, Kristen Zory King, is doing a 30-day Bikram Yoga challenge to raise money for FSMA, in honor of Oscar. For those of you who don’t know about Bikram yoga, it is also known as “hot yoga” because it is done in a 105 degree room. The same 26 poses are performed twice during each 90-minute class. And Kristen is doing it! She’s 16 days into it already! Kristen is keeping a regular blog about her experience and she has an indiegogo page she is using to raise money.

Kristen, during last summer's Harry Potter Birthday party at Writers & Books! Always championing a good cause!

Kristen’s commitment to 30 days of yoga has inspired me. There was a time in my 20’s when I was attending Iyengar yoga classes twice a week. Now I can’t remember the last time I had an exercise routine. Hell, I can’t remember the last time I got any exercise that didn’t involve lifting Oscar. So, I have decided to take on my own yoga challenge this month. I am committed to completing a minimum of 4 minutes of yoga per day this month. Why 4 minutes? This is about how long it takes me to complete two rounds of sun salutation, and that is about all I can concretely commit to. And indeed 4 minutes of yoga a day is making a difference!

Kristen was worried that she set her fundraising goal too high at $500. She surpassed it less than a week into the challenge. I wasn’t surprised. My goal is to see how far beyond her original goal we can go. Double? Triple? Kristen has set some fun parameters for possible donation amounts ($20 vote of confidence, $30 dollar-a day, $52 dollar per pose, $105 dollar per degree). I’d like to offer up my own level of support, the Sally Special: $4 for a dollar-a-minute!

What really matters though, is spreading awareness about FSMA, and the way they are making a significant difference in the lives of so many. In addition to the incredible support they provide through care packages and the annual conference, they have also funded over $55 million in SMA research in the last 30 years. A million thanks to FMSA!

Kindergarten! on Friday, September 20, 2013

Oscar started kindergarten almost three weeks ago. He LOVES it! The first day we asked him how it was, and he said, “It was AWESOME.” And he has continued that same response every day.

Oscar is in a typical kindergarten classroom with 18 other children, one teacher, and a one-on-one aide. And it just so happens that a well-liked teacher from his preschool followed him to kindergarten to be his one-on-one! He attends five mornings a week, for two-and-a-half hours each day. His school runs on a 6-day cycle (meaning he has his special classes—music, library, and gym—on days 2, 4, and 6, rather than Monday, Wednesday, Friday—that way when there is a Monday or Friday holiday, no one is missing out on their special classes). Oscar has his PT and OT services after school on three cycle days, as well, so as not to pull him out of the busy kindergarten day for services. He just gets a half hour or an hour (depending on the day) tacked on to his school day. In addition, his physical therapist attends gym class with him, and his occupational therapist pushes in to his classroom one cycle day during work time.

There was a lot of preparation leading up to the first day. We had eleven visits/meetings at the school, that I can recall, between January and August. Some of these are visits that any child entering kindergarten would make: 1. Parent informational meeting, 2. Registration (dropping off paperwork), 3. Kindergarten screening day, 4. Meet the teacher and visit the classroom. The other seven were more specific to a child falling into the realm of special education with an IEP (Individualized Education Plan), or just more specific to Oscar himself: 1. An initial meeting with the school psychologist, who is also the chair of the Committee on Preschool Special Education and helps many families with transition (this was to start talking about classroom layout, toiletting needs, busing needs, etc), 2. A meeting with the school psychologist, Oscar’s new PT and new OT to start to lay a plan for his services, 3. A tour of the building with Oscar to get him familiar and to assess the accessibility of the facilities, 4. The CSE (Committee on Special Education) meeting to go over his IEP and address any needs for the coming year, 5. A visit to the playground with the PT to assess the accessibility of the playground and allow Oscar to become more familiar with his new PT, 6. A visit to demo a new stander for school, and 7. A team meeting (his teacher, his one-on-one, his OT, his PT, and us) the week before school started to go over final details before school started.

And this does not include the three times one or more personnel from the primary school paid a visit to Oscar’s preschool to observe him there, or the time his new PT came to our house for a visit.

We moved to Brighton, suburb just beside the city of Rochester, three years ago. Real estate in the Rochester area is cheap compared to much of the country. Taxes, however, are some of the highest in the country. And Brighton’s taxes are among the highest in the greater Rochester area. So far, as they have ushered us through preschool (Oscar did not attend preschool within the district, but the district oversaw the services he received through preschool), and now through the transition into kindergarten, every single penny of those high taxes is worth it.

The amount of care that has been taken in preparation for Oscar starting kindergarten has been incredible. Each person involved in this transition has asked us questions, listened to our answers, and followed our recommendations, except when they have come up with even better solutions themselves. Brighton tends to be known for their excellence, especially when it comes to children with special needs, and children who are bright. It appears that Oscar might fall into both categories, and so I think we have chosen the right district.

We have heard of other families affected by SMA who have sent letters home to parents in their child’s class at the start of the school year, introducing their child and family, and explaining the wheel chair, and what language might be appropriate to use. We brought this idea to staff at his school. They listened and then they asked questions. They wondered if calling attention to the wheelchair was really necessary. They are so adept at dealing with kids with all different kinds of needs that teaching diversity and acceptance is ingrained in everything they do. Oscar is Oscar. He uses a wheelchair. He’s still simply Oscar. It’s really a miracle that they are able to look at him the same way we do. To see the kid first, and the disability as secondary. And to teach that same open-mindedness to all the children at the school.

Dinner conversation has taken on new meaning since Oscar has started kindergarten. Often, he will sweetly ask each of us, “How was your day?” Then he will ask, “Do you want to hear about my day?” Each night, as a family, we look forward to hearing about Oscar’s adventures from kindergarten at the dinner table. He will often get partway through, and then ask enthusiastically, “Do you want to hear some more about my day?”

We know we are pretty lucky as, so far, Oscar describes his day in great detail to us, breathlessly recounting how he enjoyed center time—each day small groups in his class rotate to four different tables to do different activities, which might include pattern blocks, the geo board, an art project, working on a book, and even snack time! He is also quite enthusiastic about his specials: music, library, and gym. He loves recess and has mentioned seeing some friends he knows from outside of school on the playground. He loves the smart board and the ABC phonics song. And he has said about his teacher, “Mrs. Flaherty is the best.” Last Friday Oscar came home, nearly bursting at the seems with pride and joy, saying, “We did writing workshop today!” No surprise, the son of two writers…

Oscar is also making new friends, quickly it seems. He often comes home with stories about the kids who are in his center group (who rotate to each of the four centers with him), about what they are eating for snack, or how he and another child were naughty because they kept whispering to each other when they were supposed to be concentrating on a particular project. It feels like a real step forward. Prior to now, activities and play with other kids in his peer group have been so physical, and fast-paced, that it seems he sometimes got left behind—by no one’s fault (in fact the staff at his preschool was excellent at making sure he was included), just the simple nature of early childhood play. Not yet five, Oscar is one of the youngest kids in his class, if not the youngest. Now that he is surrounded by a slightly older peer group, with a slightly more structured routine, there seems to be a system established that allows him better access to friendship. This is very exciting!

We are looking forward to more kindergarten adventures as the year unfolds!

SMA Awareness Month: The Day-to-Day on Sunday, September 1, 2013

SMA Awareness month has drawn to a close. What makes the day-to-day of raising a kid with SMA different from the day-to-day of raising a kid without SMA? Since I’ve never raised a kid without SMA, I might not be the best person to answer that question, but I’m going to try. Also, the range of needs of SMA kids varies, I can only clearly speak to Oscar’s day-to-day. Some families have a much more complicated situation, and others less complex. So here we go…

When Oscar wakes up in the morning he calls out to us to ask if he can wake up. If it’s not a school day, he likes to play in bed for awhile in the morning. His bed raises up so he can sit right in bed supported. There is a control that he can work himself to do this. We bring him whatever toys he is requesting that morning, though we often have to remind him that he needs to  tell us all at once what he wants, rather than every three minutes requesting something new. Once he’s finished playing, we have to lift him out of bed to get his day started. Each time he needs to go to the bathroom we have to get his pants down, place him on the toilet, and stay with him the whole time. When he’s ready to sit at the kitchen table for breakfast (or drawing!) we transfer him to a high chair, not because his power chair can’t work at the table, but because the high chair is a little more compatible with the table.

When Oscar wants to play with a friend, most often he goes in his bumbo chair with the tray.

Because Oscar spends most of his day sitting, his muscles are tight, because they don’t move through a regular range of motion the way muscles of ambulatory people do. So, we have to stretch him, and a great way to do this is with knee immobilizer braces. The recommendation is for him to sleep in them so that he has an extended stretch, but we are not willing to mess with sleep right now, so we put them on him for extended reading or playing times on the couch.

Oscar also needs to go in his stander daily. The recommended time is a minimum of two hours. That is very difficult to fit in. During preschool he was getting 45 minutes to an hour during school time. This might be reduced at kindergarten, since kindergarten is a busier schedule. We try to get him in it daily at home, but if he has PT, aqua therapy, or if we have plans it can be difficult to fit that time in.

Oscar can still play in his stander, but he doesn’t have much independent movement. The stander is important for his bone development (as he bears weight in his stander), his respiratory health, and his digestive health.

Oscar has a daily respiratory routine that he has to do, cough assist machine and nebulizer:

The two machines together take about 15-20 minutes. In the summer he has been able to do “the dance,” as we’ve taken to calling the respiratory routine, just once a day. Soon, as flu season comes back, he will need to do this twice a day. And any time he is sick, the frequency increases to approximately every two waking hours, with cough assist being done as often as needed (Oscar’s weak chest muscles don’t allow him to cough strongly enough to clear any secretions from his lungs).

Once every two to three nights we have to remember to plug Oscar’s chair into the battery charger so he can still get around!

In addition to all the equipment, Oscar has physical therapy 4-6 times per week, depending on the week. About half of that happens at school, with the other half happening at our home or at CP Rochester in the therapy pool. He also has occupational therapy 2-3 times per week at school. All of the other meetings and appointments are spread out enough that I wouldn’t consider them part of the day-to-day, but I would say we (with him sometimes included) have around 30 meetings per year to go over his services and/or needs for school and home, and we have an average of maybe 20 or so doctor’s appointments per year, in a year without any major complications.

Despite all this, most of the time we just look at Oscar as a normal kid. He does all the things a typical almost 5-year old does, just in his own way.

Since it is SMA Awareness Month, we’ll ask again that you please consider sharing this blog post, and our web site with others. The more we raise awareness, the more thoughtful people can be about accessibility and acceptance.

Shhhh…Oscar is sleeping on Monday, August 26, 2013

This photo was taken on our trip, the day before he got his Panda.

We have a new sleep plan. And so far, two weeks in, it is working.

For over a year, probably closer to two (since he has been sleeping full-time in his own room), Oscar has been waking in the night and calling out to us, on average, between four and eight times per night. Some nights it has been a dozen. And on rare occasions, only two. We have been beyond exhausted. Hitting the snooze button repeatedly each morning, getting up late, dashing around trying to get out of the house—all while being very cranky. I have noticed my mental capacity diminish significantly, no longer able to hold details that used to be second nature, unable to focus my attention for long periods of time or with the same acuity I used to. And evenings have left us with virtually no energy accessible for things like writing, playing music, reading (all necessities in our lives), not to mention socializing with friends and family or even with one another.

The tricky part about Oscar’s sleep patterns is that it has been very difficult to determine the source. Most of the time in the night when he calls out it is to ask to roll over. He is actually capable of rolling from side to side, as long as he doesn’t have covers, and as long as his legs are not in a position that prevents him from lifting them enough to get the momentum to roll, and as long as he isn’t tangled up with one of his stuffed animals enough to prevent him from lifting his arm off the bed and making a move. Sometimes he genuinely can’t roll, or can’t get into the position he’d like to be in. Sometimes he’s having a dream and is calling in his sleep. Sometimes it must just be the habit and comfort of having us come into his room in the night. A couple of times he has called out and one of us has gone in simply to have him say, “I love you.”

Some nights he has called out in 20-minute intervals, other nights he’ll go a couple hours at a time. Some nights he calls us three or four times before we’re asleep, other times his first call-in isn’t until one or two in the morning.

It has been very difficult to determine why he calls each time he does and which times he needs us, and which times he simply wants us. We’ve asked around for advice. At the 2012 FSMA conference a parent asked the group about sleep. The mom moderating the session laughed and said her daughter is 18 and if anyone had any advice, she was all ears. Some kids with SMA do have issues with hypoventilation at night, where they are not exhaling enough carbon dioxide, and need to use a biPAP machine, similar to what is used for sleep apnea. Oscar had a sleep study last fall which returned no concerning results, and therefore also no answer as to why he wakes so often in the night. We met with the psychologist at the sleep center who helped us put a sleep ticket reward system into place (he began the night with 8 tickets, each time we came in we took one, and in the morning he received as many stickers as he had tickets left). He enjoyed getting stickers in the mornings, but it seemed to make no impact on his sleep habits whatsoever.

I posted in desperation one morning, after a particularly rough night, on a Facebook group for type 2 SMA parents, asking for advice. The responses I received ranged from things like, “I’m so sorry. My child only wakes up 2-4 times per night and that’s manageable for us,” to “My teenager has always slept in my room with me, right beside my bed, so it’s no problem for me to wake up every 20 minutes to roll him/her.” No solutions that were going to solve our sleep issues.

I felt convinced that there had to be a solution. We couldn’t just not sleep for the rest of our lives. Having a nurse come in at night could be an option, but that doesn’t feel right, for now, while Oscar is 4. Maybe when he’s a teenager and he needs more independence from us.

I remembered that there was a mom in that conference session last year who had said she retrained her son when he was little to be able to sleep better. I sought her out at this year’s conference. We managed to sit with her and her family one morning at breakfast and learned about the, “Yawn, and go back to sleep,” system she had implemented with her son when he was around three years old. The idea was that if he woke up in the night, instead of calling out, he should yawn and go back to sleep. Mary said it was hard work and did involve some tears, but it worked. She said she’d ask Danny, “Do you want a happy mommy or a cranky mommy?” And she encouraged us to use rewards and even bribery if needed! She talked with Oscar and told him kindergartners don’t call their moms and dads in, in the middle of the night. And she had Danny talk with Oscar. It was wonderful! And so refreshing to hear there might really be hope.

We took the idea home with us and told Oscar we’d soon be working on implementing it. David and I talked strategy and logistics of implementation (and tried to muster our courage, all while experiencing a severe lack of sleep!). We practiced, “Yawn and go back to sleep” with Oscar during the day time. And at night before bed Oscar would say, “But we’re not doing it tonight, right?”

“No, sweety. Not tonight. But soon.”

I was terrified. I anticipated screaming and crying in the middle of the night, disrupting sleep even more so than it already was. Finally we worked up the courage to come up with a concrete plan. We’d allow Oscar three call-ins on any given night. We purchased three small push-button lights, much like those that might be mounted under countertops. I covered each with different colored scotch tape, to dim the light and to differentiate them from one another. We positioned the lights on the bookshelf at the foot of Oscar’s bed, hoping he’d be able to see them from any position he was in. We’d turn them on when we put him to bed, and then each time he called us in we’d first stand outside his door and encourage him to yawn and go back to sleep. If he couldn’t, one of us would go in, help him with what he needed help with, and then turn one of the lights off. After the third light was off, we wouldn’t be coming back in until morning. “Emergencies” would be freebies (no light turned off) —this would include things like being too hot or cold, needing to go to the bathroom, or having a bad dream.

We also let Oscar pick out some “guys” as rewards. He chose a set of three plastic characters from Monsters University. The first night that he managed to call in three or fewer times, he’d earn one guy. Then he’d have to do two nights in a row for the second one, and three nights in a row for the third.

It has been two weeks since we implemented this plan and Oscar has called in three or fewer times 13 out of 14 nights. He has now earned five guys. He’s proud and we’re functioning with a little more ease (it will take some real time to make up for years of lost sleep). There have been no tears. None. I guess we talked it up enough while we were looking for our courage that he knew what to expect. He embraced the plan and went with it.

Now, two other things happened simultaneously that might have been critical—it’s hard to know for sure. 1. We reduced Oscar’s nap to one hour. He used to nap for anywhere from an hour and fifteen minutes to two and a half hours. He wasn’t really having a hard time falling asleep at night, but we thought perhaps he doesn’t need as much sleep during the day (I tried, for one day, eliminating his nap altogether—it was disastrous). 2. He got a new panda bear stuffed animal from Liz when we went to the San Diego Zoo and suddenly he became more flexible about snuggling with animals at night. Previously he would only snuggle with Mr. Hot Wheelz, a large teddy bear that Heather gave him at last year’s conference. He had to have Mr. Hot Wheelz positioned just so and needed him repositioned every time we went into his room at night. Whenever we suggested switching to a smaller animal, or keeping two different animals on either side of his bed, we were met with emphatic refusal. Mr. Hotwheelz still has a prominent place sleeping against the wall on Oscar’s bed, within reach, but Oscar, by his own design, now goes to sleep snuggling panda who is much smaller and then Oscar has a collection of smaller animals arranged around him. When we do help him roll now, he seems satisfied to cuddle with whichever animal is closest. And many times we have gone in, he has rolled himself, and may not even be snuggling an animal.

One night last week Oscar slept from about 9p.m. until 5:30 a.m. without us going in at all. That was the first time in his nearly five years on this planet that was completely alone for over eight hours in the night.

I fear I might be jinxing our good fortune by sharing it here with you, but we want to give you the opportunity to celebrate with us—we know many of you have offered help and empathy. We know, very well now as parents, that patterns shift and change. And we’re sure that other sleep challenges will rear their heads in time. For now we are grateful for these last two weeks. David jokes that it will cost us a fortune, at the rate that Oscar is earning guys. So far, it’s cost about $6/week. We’ll gladly pay that for sleep! (And, actually, Oscar does seem to understand that once he has truly gotten the hang of the new plan, he won’t need rewards any longer).

Perhaps sometimes a clear plan with a gentle but firm commitment is what it takes to get what is needed. Wish us luck that this may continue!

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